Skip to main content

Another Birthday, Another Year Sick

I turn 27 on Tuesday.  That is the age that my mom was when I was born.  I am now half her age.  By this time in her life, she had her dream job, a house, a husband, and a new baby.  I have spent the last 10 years sick, and those things seem like a lifetime away, and may never happen for me.  Don't most people look back at the past year and think of how happy they are to be where they are today?  I have another diagnosis to think about, surgery coming up at some point soon, lots of appointments, and I'm dreading all of that.

I try to do some happy things each year for my birthday, but the last 4 I have spent in the hospital or just getting out of the hospital.   Pneumonia (x2), uncontrolled bleeding that warranted a day in the ER for monitoring and possible blood transfusion, and last year, I couldn't even look at food despite being pretty healthy, at least compared to the past few years.

This year, yes, I am still sick, but hopefully no drastic issues or illnesses come to me on my birthday.  I would rather not visit MGH this year.

A lot of people would criticize me for my "prepare for the worst, hope for the best" approach to all of this.  I have prepared for good news before and it seemed to hit me harder when it wasn't good news, so now, at least I'm not let down by bad news anymore.  Someday maybe things will turn around but for now, I feel like I have to do this to protect myself.  I have turned into a pessimist after the last few years of disappointments and devastating lifelong illness.

In good news, over the last year I have lost a ton of weight, felt pretty good about how I looked until recently, got to travel to Houston for ENDO, Florida to speak at a friend's PA school, DC to have a fun weekend with friends, and Colorado for my cousin's wedding and to finally get to see where my brother has been living for the past few winters.  I also happened to be in Colorado at the same time two of my favorite people were there!  I have changed my work schedule to allow a whopping 4 days a week for appointments and rest including weekends, and I felt a little less stressed to the max because of it.  I get to see my grandmother a lot these days, almost every week, and I'm glad to have that time with her while she is still around.  My sister has a new job right down the street from where I work, although that will be changing soon.  My brother has been home with us for a whole year, and has been focusing on his band and drums, hopefully he will make it big someday!

I purposely gave myself a break this week and last week from appointments for many reasons.  I needed a break.  Desperately needed a break.  I don't think most people realize that it's not just showing up and having a physical.  It's going in for labs the week before,agonizing over those results for a week, dealing with traffic, going into your appointment and either hearing bad news you were prepared for, or news that you disagree with, going home, informing both parents, best friend and siblings of news, and repeating it all again in a few days.  It's a lot of emotional torture if you ask me.  I decided I owe it to myself to take a break. Even just two weeks appointment free was nice.  It all begins again with 3 appointments next week!

I have spent yet another year with my main focus on my lack of health, with new diagnoses and diseases that I wouldn't wish on my worst enemy. I have put off the dreams of med school and dating for another year.  (yes, dating.  not a big deal for most but a critical thing when most of your peers are happily coupled and even getting married and having babies!)

Hopefully I'll get to have some fun this weekend with friends and family.  Happy Birthday to Me!


  1. Happy belated Birthday Danielle! I hope you had some fun. (((((Hugs))))) from Betseebee


Post a Comment

amazon audible

Popular posts from this blog

Cushing's Awareness Challenge - Day 9

The only potentially permanent treatment for Cushing's is surgery.  Whether you have a pituitary tumor, adrenal tumor, or ectopic source of ACTH, most often, you will eventually need surgery.

For me, the first step was a pituitary surgery to try to remove the tumor in my pituitary gland. They went through my nose to access the pituitary gland, which means you have no visible scars after.
I was very nervous heading into the surgery, but didn't have much time to dwell on it, as my surgery was scheduled about a week after my IPSS.  I talked to a lot of people before, about their experiences, and heard vastly different stories from each person.
The only thing I remember from before my surgery was being rolled down what looked like a basement hallway (all concrete), while passing maybe 30 operating rooms.  I saw patients in the hallways on stretchers waiting for surgery, I saw into the small windows in the doors to operating rooms, it was a very scary experience.  Obviously, not ev…

Cushing's Awareness Challenge - Day 4

I have often said, I wish I had cancer instead.  Most people would not understand this sentiment, why in the world would you wish for such a horrible disease?  
It is another common thread tying people with chronic illness together. If my disease was cancer, everyone would know what it was.  I wouldn't be questioned by my boss when I called in sick.  My friends and family would be more supportive.  My doctors wouldn't question my symptoms.
Maybe my life would be easier.
But, maybe this would not be true.  I am not looking to find out.  Chronic illness is lonely.  It seems, from the outside, that cancer is not.  Most people know someone with cancer.  Most people know what cancer involves.  Endless appointments, surgeries, maybe even chemotherapy or radiation.  Cancer is life threatening. Did you know that a lot of chronic illnesses involve all of the same things?  
With Cushing's, a lot of people have multiple surgeries.  I have had 3 directly related to Cushing's, and…

Cushing's Awareness Challenge - Day 12

Today's post is a little bit out of my comfort zone. We're going to talk about weight.
One of the most common symptoms of Cushing's is weight gain.  Some people only gain 30 pounds, some gain hundreds.  I always have a hard time quantifying the exact amount I gained because I was a teenager, or even a young child when I first had Cushing's symptoms.  My best guess is about 150 pounds, only because that is close to what I've lost after treatment.  
When you weigh almost 300 pounds, people treat you differently.  I know this, because I've also seen how people treat me now.  
I was obese, due to Cushing's, throughout college. In my opinion, this is one of the most difficult times to be heavy. My first year of college, I was often left out of plans.  My two roommates were very close, and I always felt like the third wheel.  One of them even left a letter she had written to a friend out for me to see.  It was one of the cruelest things I had ever read.  She was wis…